EB Resource http://eb-resource.com Complex Problems. Innovative Solutions. Wed, 06 Sep 2017 13:37:27 +0000 en-US hourly 1 https://wordpress.org/?v=4.4.11 EB Happenings This Fall http://eb-resource.com/2017/09/06/eb-happenings-this-fall/ http://eb-resource.com/2017/09/06/eb-happenings-this-fall/#respond Wed, 06 Sep 2017 13:37:27 +0000 http://eb-resource.com/?p=815

Autumn is almost here, and this season, a variety of events are planned to raise EB awareness and research or resource dollars to support patients and families impacted by the disease. Here are some scheduled events or ongoing campaigns, as well as links where you can get additional information should you wish to get involved or lend your support. If you know of other events planned during the remainder of 2017, please let us know. You can email me at leslie.rader@hollister.com.

  • 7th Annual Night of Discovery (Long Beach, CA) – Indulge in a special evening ‘under the sea’ to benefit EB Research Partnership hosted by Aquarium of the Pacific 7 p.m. to 10 p.m. Saturday, September 23. This year’s theme is “Lighting a Path Towards a Cure,” and will include cocktails, dinner and an auction. For more information and to buy tickets, click here.
     
  • TEAM DEBRA at Bank of America Chicago Marathon (Chicago, IL) – Lace up the sneakers or support the existing crew of participants hitting the pavement in Chicago’s Grant Park on Sunday, October 8. Runners from all 50 states and over 100 countries will be taking part. Runners start at 7:30 a.m., 8 a.m. and 8:35 a.m. TEAM DEBRA proceeds will benefit debra of America. For more information, click here.
     
  • 19th Annual debra of America Benefit (New York City, NY) – Come out for this yearly debra fundraiser being hosted by Guastavino’s on Thursday, October 26. Event runs 6 p.m. to 10 p.m. and will include cocktails, hors d’ oeuvres, a silent auction and a seated dinner. For more information and to buy tickets, click here.
     
  • Debra Inaugural EB at TPC (Duluth, GA) – Tee up for a good cause at the debut of this benefit golf tournament at Sugarloaf Golf Club Monday, November 13. Registration, breakfast and driving range begin at 8 a.m. with shotgun start at 11 a.m. Take part on the links or attend the post-tournament reception. For more information, click here.
     
  • Prevail Activewear EB Fundraiser (Online) – Browse a new line of active wear launched by actor and fitness buff Josh Brolin and wife Kathryn and support EB families in the process as part of this Limited Time Offer. Fifty percent of the proceeds of Prevail Activewear will go directly to St. Jude’s Children’s Research Hospital and the Epidermolysis Bullosa Medical Research Foundation. For a closer look at this new clothing line, click here.
     
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Wound Care Learning Resources at Hollister http://eb-resource.com/2017/08/18/wound-care-learning-resources-at-hollister/ Fri, 18 Aug 2017 12:01:29 +0000 http://eb-resource.com/?p=813 *Information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional regarding any healthcare needs.

 

We have blogged in the past about specific wound care products that EB families may employ daily. As EB families bring others into their circle to support caregiving needs, they may need additional information for others who may be sharing in duties. Did you know that Hollister offers Wound Care Learning Resources for its wound and skin care products including informational demonstration videos at its website?

 

 

 

 

 

 

 

 

 

The Hollister line of wound care products has its own section of Wound & Skin Care Learning Resources dedicated to providing information for each product. For example, for families who might be using the Restore Contact Layer FLEX and Silver dressings, videos are available that not only explain Hollister’s TRIACT technology but also best use of the product. These videos also show products being applied and all related supplies or materials that may be used during the dressing process with that product.

 

In addition to online videos and product information, Hollister Wound Care also offers valuable tools to provide metrics to families as they evaluate products they are using and making decisions to adjust the supplies they use in their daily wound care process. The Wound & Skin Learning Resources section of the website includes such tools as the Pain Assessment Scale and the Wound Measuring Guide to help caregivers evaluate the dimensions of wounds being treated to select the right product and cut dressing materials properly.

 

If you or your family visit the site’s Learning Resources page and are unable to find your question answered, you can reach out directly to the team at Hollister by clicking here. But please note: you should always reach out directly to your physician with any questions specific to the care of your family member with EB. Getting as much information as you can to become as informed a caregiver as possible will ensure you have access to the most up-to-date knowledge about the disease and learn all that you can about the best treatment options available.

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EB Community Goes Beyond Sea to Shining Sea http://eb-resource.com/2017/07/05/eb-community-goes-beyond-sea-to-shining-sea/ Wed, 05 Jul 2017 11:07:27 +0000 http://eb-resource.com/?p=811

 

As we Americans recover from our Independence Day festivities, I thought I would take a moment to remind all of us just how broad the EB community is. Because it is such a rare disease, EB families can feel alone sometimes or like they are part of a very small network of communities scattered across different parts of the country. But as a greater number of people become familiar with epidermolysis bullosa here as well as abroad, the community at work to raise EB awareness and research funds, and tackle the clinical challenges at hand becomes bigger. International efforts are in place across the globe to find better treatments and work toward a cure.

 

In addition to the Debra International alliance hub based in Vienna, Austria, there are 50 Debra member groups established throughout the world. Besides debra of America, a number of very active networks support EB families in Australia, Canada, the United Kingdom, Ireland, France, Germany, India, Italy, Japan and Switzerland, to name only a few.

 

There are also research clinics and universities who have committed to Debra International’s EB-CLINET Partner program, a network of EB centers and experts designed to establish a centralized global site for the exchange of EB knowledge and clinical experience. Members of this international network are scheduled to meet at its fourth conference this September in Salzburg, Austria. It will provide participants a helpful, in-person opportunity to interact and share valuable clinical information with each other.

 

EB without Borders is another program that has been established (through Debra International) to support EB patients and their families in countries where there may be no support or debra member group yet established. Participating Debra member groups who support this initiative might provide these other countries in need mentoring support for the physicians trying to help the families, or other specialized services, supplies or knowledge.

 

EB clinical research and awareness campaigns are underway around the world. Though it may feel at times like we are alone as EB families, thousands of people across the world are not only facing similar challenges but have set out to conquer the same goals in mind: creating better treatments for this disease and hopefully one day eradicating it completely.

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Latest EB Research Updates http://eb-resource.com/2017/06/13/latest-eb-research-updates/ Tue, 13 Jun 2017 11:07:48 +0000 http://eb-resource.com/?p=809 From time to time, we share information about certain clinical trials that are currently in progress and in some cases, still recruiting participants. We highlight trials that could possibly benefit the EB community through its research findings and use of it in creating more powerful treatment for the skin disease. Using the U.S. National Institutes of Health (NIH) website, we have compiled a summary of these research trials that have been logged by the NIH.

 

 

As of June 2017, there are 22 open, international, EB clinical research trials listed as active, with one of the studies not yet recruiting. Of the remaining 21 EB research studies which are open and recruiting, 13 of them are being run within the United States and eight are active in other internationally-based locations.

 

The following summary includes general background information related to the 13 open and recruiting U.S. studies. For complete, up-to-date listings for all EB studies open and recruiting here in the U.S. as well as internationally, please visit the NIH’s Clinical Trials page here: http://clinicaltrials.gov/ct2/results?term=epidermolysis+bullosa&recr=Open.

 

The following is not an endorsement but a summary of EB clinical trial background information available at this time and is strictly for informational purposes only. For more information, visit the links provided. You should also consult your health care professional and thoroughly understand the potential risks involved with a clinical trial before you participate in any clinical trial. We take no responsibility for any results or outcomes associated with the following clinical trials.

 

 

· Study of Efficacy and Safety of SD-101 Cream in Patients with Epidermolysis Bullosa. Sponsored by Shasa Hu, M.D., at the University of Miami, the aim of this study is to investigate the effects of a topical cream on patients 12 years of age and older that have been diagnosed with epidermolysis bullosa. Launched in July 2016 and last verified in May 2017, this study is currently recruiting participants at the University of Miami Department of Dermatology in Miami, Florida. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Stem Cell Transplant for Epidermolysis Bullosa. Launched in January 2010 and last verified in February 2017, this study by the Masonic Cancer Center at the University of Minnesota attempts to test two hypotheses. The underlying hypothesis is that the infusion of bone marrow or umbilical cord blood from a healthy unaffected donor will correct the collagen, laminin, integrin, or plakin deficiency and reduce the skin fragility characteristic of severe forms of EB. A secondary hypothesis is that mesenchymal stem cells from a healthy donor will enhance the safety and efficacy of the allogeneic hematopoietic stem cell transplant as well as serve as a source of renewable cells for the treatment of focal areas of residual blistering For more information about this study, click here to link to ClinicalTrials.gov.
 

· Characteristics of Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB). Jean Yuh Tang at Stanford University is screening subjects with RDEB to evaluate characteristics of the subjects and their cells to develop new strategies of therapy and determine whether subjects could be candidates for treatment studies. This observational study at Stanford University in Stanford, California was launched in November 2009 and last verified in March 2016. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Safety and Efficacy of Diacerein 1% Ointment Topical Formulation Compared to Placebo for Subjects with Epidermolysis Bullosa Simplex (EBS). This study with an anticipated launch date of May 2017 was last verified in June 2017 and is being led by sponsor Castle Creek Pharmaceuticals, LLC. The purpose of this interventional study, being held at Texas Dermatology and Laser Specialists in San Antonio, Texas, is to compare the efficacy of Diacerein 1% Ointment to Control Ointment when applied once daily for 8 weeks in subjects with EBS. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Gentamicin Therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB) Patients with Nonsense Mutations. Sponsored by the University of Southern California, the target of this study is to evaluate the safety and efficacy of intravenous gentamicin in RDEB patients. In theory, this intravenous administration has the possibility of treating simultaneously all skin wounds of patients. Investigators also propose optimizing the concentration and manner of delivery of topical gentamicin. Launched in January 2017 and last verified then, this study is currently recruiting participants at the University of Southern California in Los Angeles, California. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa. This study launched in December 2010, led by principal investigator and associate professor at Stanford University Jean Yuh Tang, and was last verified in February 2017. The interventional study is a collaboration between the university and the National Institute of Arthritis and Musculoskeletal and Skin Diseases as well as Abeona Therapeutics. This trial, which is being conducted at Stanford University School of Medicine in Stanford, California, will create a skin graft, which the investigators call "LEAES," using the patient's own skin cells that have been genetically engineered in the lab to express a missing protein called type VII collagen. The corrected cells will be transplanted back to the patient. For more information about this study, click here to link to ClinicalTrials.gov.
 

· MT2015-20: Biochemical Correction of Severe EB by Allo HSCT and Serial Donor MSCs. Launched in March 2016 and last verified in February 2017, this study by the Masonic Cancer Center at the University of Minnesota in Minneapolis, Minnesota is a single-institution, phase II study established to determine the event-free survival at 1-year following an allogeneic transplant and serial mesenchymal stem cell (MSC) infusions from a related donor or matched unrelated donor for the biochemical correction of severe EB. For more information about this study, click here to link to ClinicalTrials.gov.
 

·A Study of FCX-007 for Recessive Dystrophic Epidermolysis Bullosa (RDEB). This study, launched in June 2016 and last verified in April 2017, is led by Fibrocell Technologies and administered at Stanford University in Stanford, California. The purpose of the study is to evaluate the safety of FCX-007, evaluate the C7 expression and presence of anchoring fibrils resulting from FCX-007, and to analyze wound healing as a result of FCX-007 administration in subjects with RDEB. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Survey to Identify Burdens and Unmet Needs of Patients with Epidermolysis Bullosa. Launched in April 2017 and last verified in May 2017, this observational study sponsored by Amicus Therapeutics in Cranbury, New Jersey, intends to collect information on key aspects of life with epidermolysis bullosa (EB) including diagnostic journey, treatment, management, daily living challenges, and overall psycho-social, socio-economic, academic and family impact. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Study of Cellutome System for Treatment of Individual Lesions in EB Pts. Led by principal investigator Jakub Tolar, MD, PhD of Masonic Cancer Center at the University of Minnesota in Minneapolis, Minnesota, the target of this study, launched August 2016 and last verified in February 2017, proposes local wound therapy using epidermal skin grafting from the same donor that provided the hematopoietic graft, or from the same EB individual with a mosaic (naturally gene corrected) skin. In both cases permissive immune system and skin chimerism is expected to enable long-term epidermal engraftment and wound healing. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Neurokinin-1 Receptor Antagonist for the Treatment of Itch in EB Patients. Sponsored by Jean Yuh Tang of Stanford University in collaboration with the Epidermolysis Bullosa Research Partnership and Menlo Therapeutics, Inc., this interventional study launched in July 2016 and was last verified in August 2016. The study held at Stanford University in Stanford, California aims to target the physiological mechanisms of pruritus (or itch), the most common complaint reported by patients with EB of all subtypes and determine whether daily oral administration of VPD-737 (5 mg) is effective and safe in adolescents and adults with EB. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Using Topical Sirolimus 2% for Patients with Epidermolysis Bullous Simplex (EBS) Study. Sponsored by Stanford University and led by Joyce Teng, MD PhD, this interventional study was launched in May 2016 and last verified in November 2016. The pilot study targets the dominant mutant keratin proteins in the skin to ameliorate the severity of EB simplex. The purpose is to improve the function of EB simplex feet with an application of topical sirolimus, 2%. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Effect of Broccoli Sprout Extract on Keratinocyte Differentiation in Normal Skin. Launched in September 2015 and last verified in October 2015, this study led by Johns Hopkins University in Baltimore, Maryland features adult participants who will apply a broccoli sprout extract-jojoba oil compound to one arm every night under occlusion for a week with Jojoba oil alone applied to the other arm. At the end of that week, a 6mm punch biopsy will be taken from both arms and analyzed via polymerase chain reaction (PCR) and immunohistochemistry for differences in skin proteins. For more information about this study, click here to link to ClinicalTrials.gov.

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Families on a Mission http://eb-resource.com/2017/05/05/families-on-a-mission/ Fri, 05 May 2017 12:02:16 +0000 http://eb-resource.com/?p=807

 

Many families that I know divide up their responsibilities among members in the house. It may not be distributed evenly but each person usually has their role to play. For EB families, it is no different and that can mean not only house duties but care for the loved one diagnosed with EB and promoting EB awareness.

 

There are several ways that family members both immediate family as well as extended family can support the EB community within their own circles and during their daily interactions. It can be anything from hosting fundraisers or EB awareness events in their neighborhoods to finding unique ways to donate to organizations focused on supporting EB families and research. For example, those who frequently shop online can seek out nonprofit matching promotions such as Amazon’s Smile program which enables the user to choose what registered nonprofit on the site they want to benefit from their shopping dollars upon login. Other vendors including Gorjana Jewelry and NuSkin enable shoppers to purchase merchandise and see dollars donated directly to a specific EB organization.

 

Older siblings in an EB family can educate other children and teens through conversations or school awareness events about epidermolysis bullosa to help cultivate an informed and supportive environment. Extended family members such as aunts and uncles, grandparents or cousins may be able to lend a hand to support parent caregivers by providing backup care and opportunities for stress relief, something critical to any caregiver.

 

If you are part of an EB family, what role do you play? And consider this: is there something more you can do to support others outside of your family and within the EB community? Please comment here and share your own thoughts on the various roles people connected to or part of an EB family can play. We’d love to hear from you.

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Your EB Story http://eb-resource.com/2017/04/20/your-eb-story/ Thu, 20 Apr 2017 12:01:43 +0000 http://eb-resource.com/?p=805

 

What is it that draws us to want to know more about other people we may meet along the way? Often there is a common interest or bond of some kind. Within the EB community, many parents have taken an otherwise trying facet of their lives and found a way to not only inspire and educate others, but help build a support network. This has been done by simply sharing their story, whether it is by hosting an event in their community and introducing neighbors to what living with EB is all about or proactively reaching out to local media to share their story with a larger audience.

 

It can be a tough decision on how much we want to share as a family. In my various roles interacting with the EB community, I always strive to be an advocate for families and a supporter in whatever way I can help best, such as directing someone to a resource that I think might be especially helpful to a family. But my role as a mom and as a parent who has lost a child to the devastating disease only motivates me more to reach as many families as I can every day and educate others about EB who cross my path.

 

Before you decide how you can best tell your family’s EB story, you must determine just how much you are willing to open your family’s life to the outside world. As you often see on the EB Resource Twitter and Facebook feeds, several families have shared with local TV affiliates and newspapers about their family, and that includes allowing those media outlets to capture visually a candid view of the disease and what caregiving is entailed for a person with EB. If you agree to tell your story this way, you must be prepared for the possibility of additional attention after the story runs. Some families instead choose to tell their story their own way through blogs, books, photo galleries or YouTube videos. If you want to be an active part of the EB community and support and educate others, then do not lose sight that you are ultimately the final decision-maker on what is the best way to do this that will be the least disruptive to your family.

 

Whatever your personal circumstances may be or your view on what your role could be within the EB community, I encourage you to take the time to contemplate what more you can do to take the experience of living with EB and translate it for others. The wisdom and support you may lend to another family who have only begun to learn about the disease and what this diagnosis will mean can be invaluable. The impact you can have on bringing greater awareness to a relatively unknown subject like EB is immeasurable.

 

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Springtime EB Awareness Events http://eb-resource.com/2017/03/17/springtime-eb-awareness-events-4/ Fri, 17 Mar 2017 15:46:59 +0000 http://eb-resource.com/?p=803 From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.

 

Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).

 

In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.

 

  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.

 

  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
     
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
     
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.
     
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Springtime EB Awareness Events http://eb-resource.com/2017/03/15/springtime-eb-awareness-events-2/ Wed, 15 Mar 2017 10:08:05 +0000 http://eb-resource.com/?p=799 From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.

 

Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).

 

In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.

 

  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.

 

  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
     
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
     
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.
     
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EB and the Rare Disease Community http://eb-resource.com/2017/02/28/eb-and-the-rare-disease-community-3/ Tue, 28 Feb 2017 21:52:28 +0000 http://eb-resource.com/?p=795 Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

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EB and the Rare Disease Community http://eb-resource.com/2017/02/28/eb-and-the-rare-disease-community-2/ Tue, 28 Feb 2017 21:04:30 +0000 http://eb-resource.com/?p=793 Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

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